Autism Awareness

I missed World Autism Awareness Day. Well, I didn't actually, I'm quite aware of Autism, I live with it everyday:)

But, I had the best of intentions of sharing some information I found on what to look for when screening for autism. So, better late than never.

This link is to a video of some of the things parents can look for in their children if they suspect autism. And my advice, if you do suspect that your child is showing symptoms, RUN, don't walk to your pediatrician. If I had gone when my gut was SCREAMING at me, Porter would be getting IBI Therapy right now instead of being on a waiting list.

http://www.youtube.com/watch?v=1VA6Q3vTC_o&feature=related

And I guess it's not just for parents, maybe it's your grandchild or niece or that little boy at daycare...I know it certainly is an uncomfortable conversation to have if you are not the parent but I tell you, they will thank you for it later . Most often parents are worried anyway but convince themselves they are over reacting or they are just so used to their child's quirky little ways that nothing seems unusual.

 But knowing how long these kids have to wait for services, I'd be the first one to speak up now. And if you're wrong, fantastic! But if not, that child is now able to receive interventions much sooner than they would have had you "waited it out".

Chat soon
Rae

Ruby and Research!

So Ruby Duby Doo got her first tooth the other day. I knew something was up, she just hasn't been her normal happy-go-lucky self and she has been drooling like crazy! But even though I knew it was coming, I still found myself shocked when it happened.  But then I realized she is right on schedule, I'm just not. I can't believe my girl is 6 months old already. Everyone always says "enjoy these moments, they go by so fast".

Darn it if they aren't right.

They DO go by so fast.

It seems like just yesterday she was learning how to hold her head up and now here she is learning to crawl ( this video doesn't even do justice to how much distance she is getting!)

Did you notice how she looks at me when I call her name? I did. I find myself double checking things like that.  I wouldn't be human if I wasn't concerned at all if she will have autism too. Statistics say that she has a 1in 5 chance as a sibling (although I've read it is lower for girls.)  I'll admit, it scares me a little. But then, I feel guilt for praying that she doesn't have it. I mean, Porter is perfectly perfect exactly the way he is, but watching him struggle to communicate breaks my heart daily and that is because of autism, so if I could take it away, I would. However, if (and that is a BIG IF) it happens and Ruby does have autism, we will be so much better prepared this time. In fact we are now officially a part of an autism sibling research study. If you want to learn more about it, click on this link:

http://autism.medicine.dal.ca/participating_in_studies/studies/infant_siblings_asd.php


Now it would be ideal if we lived in the Halifax area because if she shows signs of autism they are offering early intervention right away. No waiting lists. But we figured that if she does show signs we will get her on the waiting list here much sooner and I'm guessing that having researchers back you up on your concerns may possibly speed up the process:)

But having said all of that, I'm probably not as worried about our girl as I thought I would be. I spent hours while she was still growing inside me reading about the possibility of her having autism and those first few weeks after she was born I found myself looking her over and desperately trying to get her to make eye contact before she was even developmentally ready! But as each day passes, I worry less and less. It's more of an instinct that she is just fine. With Porter it was a feeling that just wouldn't go away and it started early, if I tell you how early, you'll think I'm completely loony so I'll save that for another day. But with Ruby, I just don't have that feeling.

I worry about her for other reasons though.

I worry that her little heart is breaking every time she looks up at her big brother and he pays absolutely no attention to her. I worry that kids might ask her "what's wrong with your brother?" when she gets older. I worry that she will feel that he gets way more attention than her. I worry that she will be fearful that her own children will have autism. I worry that her and Porter won't be best friends like I hope. I worry that she will imitate some of his undesirable behaviour. I worry that she won't understand why he flaps his hands like that.

I could go on all day. So yes, I do worry about her. But in ways I didn't expect.

I do know that she will grow up with an infinite amount of love. And I do know that she will learn so much from her brother. He has taught us so much already and he is not even 3 years old . These things I do know for sure.

Rae

Motherhood!

It's a Monday and I have had a rough week so here's my rant for today....

Maternity leave is not a vacation. I have had several people recently comment on how it "must be so nice not to be working...or to have all this "time off" from work...or how they wish they could stay in their jammies until noon like me...hehehe.

Well, I know these people mean well, but come on! Motherhood is the single most challenging, physically and mentally exhausting "job" I have ever had. Yes, I signed up for it and 99% of the time I LOVE it more than I ever could have imagined, but that doesn't mean it is easy! My dear friend just went back to work last week after her maternity leave ended and I'll admit there have been moments this week where I am a wee bit jealous of her. I don't think about how crazy it must be in the morning to get two kids up, fed , dressed and ready to leave for daycare before 7:30 not to mention yourself (luckily she is absolutely gorgeous and it must take mere seconds for her to look totally fabulous!) But it's the moments after she drops them off I have been fantasizing about. The peace and quiet mostly. But then the guilt takes over and I realize how my time home is flying by and how when I actually do go back to work,  I'm going to feel like I lost a couple of limbs for the first few weeks and  I will miss them so much my heart will literally ache.

But knowing that, there are certainly days where I think going back to work would be such a break! And I work in a profession where I have to decide daily whether I want to eat ALL my lunch OR use the bathroom before the afternoon begins. No time for both.

Let me just share a "typical" morning of our lives,  I use the term typical lightly because no two days are ever the same!  But the day usually starts between 5 and 6am, that is not counting when Ruby has been up for a feed in the middle of the night or Porter has had a bad night or Marmie has jumped on my head at 2 am to get some attention because she is so incredibly neglected now. But ok, let's just say the day starts around 5:30 am.

Mark is usually on Porter duty while I get Miss Ruby fed and changed. Then we try to find something that Porter will eat for breakfast which can be a challenge , but honestly, this is the best part of the day. Yeah, we are still all a bit sleepy but there are two parents home and Porter's engine is just quietly warming up for the day. Right around 7:30 when Mark has to get dressed and ready for work is usually when things start to get more exciting! And you can almost guarantee that most of the action takes place as soon as Mark is out the door!

 Like today for example when Porter used the computer chair as a toy and "drove" it around the house and then thought he should stick his head underneath the armrest and got it stuck! True story, I can't make this stuff up! I was trying to do the first load of dishes for the day and I hear a panicky cry and there he is.... with his head stuck in the computer chair. Does this stuff happen to other people?  So there I am trying to remain calm and twist him around and gently get his head out and it isn't working and he is starting to freak out a bit and I am wondering if I am going to get that adrenaline rush that people talk about and be able to rip the armrest right off with my super human mom strength...but it doesn't happen. So I take a deep breath and tell him it's ok and we are going to get him out of there , I mean he got his head in there, he must be able to get it out....meanwhile Ruby has lost the grip of her Sophie giraffe and is screaming in the background which is my cue to run and get it for her but I can't, I got bigger fish to fry at the moment! Then finally, we get him out! You'd think he would be relieved and stop crying, but it's like the whole traumatic experience has overwhelmed him and he cries for another 15 minutes.

Ok, now I can go get Ruby her giraffe doll, which she seems no longer interested in, so I hold her for a few minutes and we play peek a boo before I try putting her down on the floor again so I can finish the dishes. I just get started again and Porter comes and starts pulling my arm which is the signal that he wants something. So I open the fridge and start spilling off the menu...."do you want a plum? an orange? how about an apple?" We finally agree on the leftover canned peaches and I get them ready and put them on the table. Cue baby screaming....I run into the living room and find Ruby has rolled over and banged her sweet little noggin on the floor, so I pick up sweet baby and start singing " my momma don't wear no socks" because that is her favorite song. It takes a few minutes but she's happy again, ok, back to the dishes. Oh wait, shoot, I forgot I have to put the towels in the dryer. Off I go to put them in the dryer and as I throw them in there I wonder again how I go through a million, yes, one MILLION towels a week. Then I here crash. I come in the kitchen to see the bowl of peaches all over the floor and Porter is crying. I have no idea if he threw them on the floor or knocked them off the table by accident. So I grab a towel to clean it up....ahhhh, right, it all makes sense now about the towels! I wonder to myself if I should offer him something else, because maybe it really was an accident and he is still hungry or should I be scolding him for throwing food on the floor? And that makes me think of all the questions I have for our IBI tutor Rebecca. I really should be writing them down, but darn, these dishes need to get done! Ok, so I'll start them again. I am just about done when Porter comes back into the kitchen, pulls his spoon from the drying rack and knocks all the dishes to the floor. This is when I start to take deep breaths.

Then I say something I thought I'd never do as a mom. "Let's go watch TV". So I plunk Porter in front of the TV and put on an episode of Thomas, how did people EVER live without DVR's....I have no idea! Ok, there...oh and look, Ruby is sleepy, time for a nap. Things are looking up, maybe I'll be able to finish those dishes after all! I take Ruby, change her cute little bummy, and put her down. I smile and realize how lucky I am to have such a beautiful good little girl and an amazing little boy...back to the dishes, but wait, why is the kitchen floor wet? Oh, looks like someone knocked over the cat's water cup. Yes, cup, they prefer cups. Mugs actually. And breathe, grab another towel and wipe it up. I quickly finish the dishes because Percy just popped a piston and I know I don't have much time before the episode is over!

Ok, dishes are done! I go into the living room to spend some quality time with my boy and he isn't there and it is unusually quiet, my heart sinks and I check the doors first...ok, they are still locked, so he is somewhere in the house. KITTY LITTER! Yes, for some strange reason he likes to play in the kitty litter. (My friend Kristine is probably throwing up in her mouth right now.) I fly up the stairs, stub my toe, I mumble something I won't repeat on this blog and rush to the closet where the litter is..phew, I DID remember to shut the door. So where is he? Wait, what is that beeping noise? Oh it's the dryer and he is pressing all the buttons for fun! Of course! Which reminds me, the towels are dry. I really should fold them and put them away.

So ok, back to the living room to spend some time with my boy. Usually we work on using PECS
( picture exchange to build his language and communication skills ) or practice gross motor imitation activities like clapping or putting on a hat! This never lasts too long because he loses interest super quickly but we try to get at least 15 minutes in everyday. Then, if we haven't filled up on food rewards it's time for a snack. This is when he asks for cheesies ( gluten free at the Superstore, super yummy btw) because since we have discovered the cheesies that is pretty much all he wants. So I get super excited when he requests them and I tell him how smart he is and I give him a small bowl ...he eats them in 2 minutes and begins the whine for more and that lasts about 20 minutes. I feel guilt, he is asking, I should reward. But he would literally eat them all day. And they really are processed junk, gluten free or not, so I say no. I offer him a couple of other choices but he holds out for more cheesies, until he finally realizes that I'm not giving in and takes the plum! I cut up the plum and take it in the living room look at the wall and realize I forgot to wipe his hands and now there is cheesie residue all over the wall. And breathe. I get the cloth and wipe down the wall and then I hear Ruby! She's awake. I get to her room and the smell punches me in the face. Yep, #2! I use a half a box of wipes cleaning up that mess and think to myself "is this much poop normal?" and take a mental note to google it later. I feed Ruby and then realize I am just about out of her baby food. So I get out my baby bullet, which I fully endorse, steam the pears , pop them in the baby bullet and Kazaam! Lunch for the rest of the week is ready! I fool myself into thinking that I totally have my act together for 2 seconds until I see Porter standing with his mouth open, his eyes watering, holding an opened bottle of baby shampoo...I smell his breath, yep, he swallowed some! I panic for a second and then realize that it is made for babies, the bottle is still pretty full and tell myself he is fine. I make a mental note to put it to the first of the google list later and then I voluntarily strip myself of the mother of the year award yet again. I grab a towel to clean up the mess on the floor and wonder why I ever questioned how I use a million towels a week!

I look up at the clock. It's 9:16am. I haven't even looked at my "to-do list" yet and I am totally wiped already. Luckily I have the two most amazing kids ever that make every second worth it.

And when Mark comes home and asks what I did today, I tell him the truth, I survived! I survived another day in the trenches doing the most grueling, hard labor work of my life! And I know I sound like I'm complaining, but it really is the best job ever. The kids are in bed so I can say that and actually mean it right now:)




Chat soon!
Rae

Forever Home!

It has been awhile since my last post, things have been just a wee bit busy! We are finally "settled" in our new house! There are still unopened boxes and hardly any pictures on the wall...oh and the basement...yeah, it is a disaster but we will get to everything in time. It's times like these when I realize that I am such a creature of habit ! I am forever going to the wrong place in the kitchen to open the utensil drawer! And it completely threw me off when I couldn't find the proper scoop to dish out the cat food...but you can all rest easy, I eventually found it!

We love our new digs! We loved our old digs too, but we were just finding it a little too small since the kidlets came along. We could have managed, I mean, I grew up apartments and mini homes and by mini homes I don't mean those fancy mini homes like my Aunt Lynda and Uncle George have that are like new bungalows without basements, I'm talking about ALUMINUM mini homes! We called them trailers back in my day and when it rained heavy , you'd swear the roof was coming in! Ahhh, childhood memories..... but as I was saying, we could have managed, but after a lot of thought, we decided it would be best to find a house with a bit more space for our family. It wasn't an easy search either! Trying to find a home in a nice subdivision, with more space and a garage , in our price range that didn't need too much work was not easy. But then we found it!

It certainly isn't perfect and it needs a little work, but it's our forever home and we just love it! We have plans to put up a fence when the weather gets nice so our little runner can play safely in his yard and Mark and I just may be able to sit down( GASP) on the deck and watch our kids play...that may seem simple enough to some people but for Mark and I who have been spending our summers chasing our boy around the yard and parks it sounds like an all inclusive vacation! We just might be able to have friends over too! Imagine!

Speaking of our little runner, he just loves his new house too! The first night was a little rough but we expected that. Considering he went to sleepover at his Nana and Pepe's (so we could move in and get settled) and he comes "home" to find that home is now a different place! I actually expected it to be much worse, but nope, he has adjusted super well! And Miss Ruby...oh, I hate to even say it...but Miss Ruby has slept 3/5 nights through the night in her own room! Now I'm sure because I wrote this she will be up all night just to keep me on my toes:)


Chat soon!
Rae

The Way I See It

So Miss Ruby is still in our room, I haven't moved her to her own room yet because it is right beside Porter's and I just know he will keep her up. Part of me thinks I should just "try it", the other part of me can't risk losing any more sleep if she wakes up. And really, we are moving next week anyway so there isn't much point to switching things up right now. ( yes, in case you didn't know, we are moving...but I'll talk more about that later). I've learned how precious sleep is since I became a momma. I fantasize about sleep actually. Anyway, that is not my point at all...

Because Ruby is in our room I have been doing a lot more reading at night (turning pages is not that noisy:) Right now I am reading  The Way I See It  by Temple Grandin. I have read one of her other books, Thinking in Pictures already and found it fascinating! Temple is brilliant and she just so happens to have autism as well. I am enjoying this book even more, she offers so much insight into the mind of a person with autism and has literally helped me change my way of thinking about autism in general.

Last week I read something in this book that has stayed with me for days. Let me share it with you.

" As a society, we equate intelligence with language. Smart people are verbal people; verbal people who can express themselves better than most are assumed to be even more intelligent. People who can't use language well are perceived as dumb. We don't usually stop and question whether oral motor skills, rather than intelligence skills, might be causing the language impairment. No, we do just the opposite and almost instantaneously judge the nonverbal person as being mentally impaired. Poor kid / adult, he can't talk. And in our minds we continue with the most damaging thought of all: and therefore he has nothing to say".

Do you feel a little guilty? I know I did. I am ashamed to admit it, but part of me used to believe this on some level. And I should know better. Me of all people! I have often said I need speech therapy.  It is worse when I'm tired ( which is basically all the time now) but even when I have had a decent night's sleep, I often struggle trying to get my thoughts out verbally. Sometimes it is that I have a million thoughts in my mind at once and I want to get them all out, other times it's that I can't think of the word I am looking for (there is a name for that, but go figure, I can't think of it!) And I absolutely consider myself an intelligent person.  I'm not a member of Mensa or anything but you wouldn't believe the information I'm storing up in this melon of mine!

 And to make matters even worse, I am an educator. I have worked with non-verbal children and now feel terrible that I lowered my expectations of them. Shame on me. Shame. On. Me.

After my reading, I was reminded of a story my dear friend Crystal sent to me about a girl named Carly a few weeks back. Here is a short video if you would like to meet this extraordinary young lady.


 http://www.youtube.com/watch?v=bHPsc08WQkw


Makes you think doesn't it? I can't believe how much Porter has taught me already and I simply can't wait to hear everything that he has to say.

:) Chat soon, Raelene

JUICE!

So yesterday our boy requested juice! Now for most people not a huge deal, for us, BIG DAY! Porter has only ever requested freezies before and to be honest we were thinking that he was generalizing freezies for everything. He can label lots of other things, in fact he'll attempt to say just about anything these days if we hold it back or say "what's this"? But requesting has been limited to Welch's freezies. And I have cut those back to two freezies a day because the child would seriously eat them all day long!

So when Porter went to the kitchen , looked at the fridge and said "juice" with the sweetest little voice ever, I thought I just might burst wide open with pride. Needless to say , there was a big celebration in our kitchen. And of course, we got the juice ASAP!

We have seen so much progress in the past month. We have really been working hard with him and we also have hired someone to do IBI therapy with him 2 days a week. I'm scared to mention her name in case someone scoops her up from me, but she's amazing. In fact, if I could, I would fold her up and put her in my pocket so I could carry her around all day. We only have her 3 hours a week because she has a full time job, but I really think it's making a difference. She is helping him, and us. Anyway, I'll talk more about that in a future post but I just had to share our great news!


 Hope everyone is having a great weekend, the weather is fantastic!

Ruby Duby Doo!

I'm not sure if we are the only crazy ones out there that give our children a bunch of funny nicknames but if you are like us, you rarely call your children by their REAL names. Lately, I like to call Ruby- Ruby Duby Doo! And it doesn't stop there, I like to sing the Scooby Doo theme song and replace it with her name so it sounds a bit like this " Ruby Duby Doo, where are you, we really need your help now" ... Weird? Hmmm...maybe.

So last week while we were in Cape Breton, our Ruby Duby Doo spent the weekend with Nana and Pepe and Auntie Robyn ( and I'm sure Uncle Phill was around quite a bit too:) It was her first night away ( not due to lack of offers :) so I felt like I was missing a part of me all weekend. It wasn't just one night, it was 2!!  And it wasn't like I could just swing by and get her if I missed her too much, we were a 6 hour drive away! Luckily I had the very best company to keep my mind off missing her so much.

But the good thing was, I knew she was in the very best hands ever. And thanks to technology ( I guess this Internet thing is sticking around) we got to have some face time with our little Rub Dubs! She was having a blast ! She even went visiting her great Meme! She LOVED Meme's doggie Sandy....check out the video that Auntie Robyn sent us to reassure us that our doll was having so much fun.

              Hardly noticed we were gone! Thanks again for taking such great care of our girl! xo